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At an event held at the European Parliament on 3rd December 2019, patients, policy makers, clinicians, and researchers met to raise awareness about the significant impact of sleep disorders in persons with Alzheimer’s disease and for their family.

Alzheimer’s disease is recognised as a major societal challenge. Around 10.5 million people in Europe are living with dementia1 and global costs are estimated at US$600 billion2. However, the link between Alzheimer’s disease and sleep disturbances is not well known or acknowledged. In fact, more than 70% of people with Alzheimer’s disease have disturbed sleep or insomnia.3,4 Evidence also shows that poor sleep may be amongst the strongest risk factors for neurodegenerative diseases, including Alzheimer’s disease.3,5 Public health officials and healthcare providers thus need to realise the significant impact that insomnia has on the onset and progression of Alzheimer’s disease, as well as on the life and health of both patients and their carers.

The event at the European Parliament featured Tomislav Sokol MEP, Joke Jaarmsa (European Federation of Neurological Associations / European Brain Council), Dr Jina Swartz (MSD), Tineke Mollema (GAMIAN-Europe), Prof. Chantal Van Audenhove (LUCAS KU Leuven) and Prof. Markku Partinen (Helsinki Sleep Clinic). Bringing together different perspectives on the topic under discussion, the speakers shed light on the heavy burden which sleep disturbances cause on people living with Alzheimer’s disease, as well as on their families, carers, healthcare professionals and healthcare systems as a whole.

Event host MEP Tomislav Sokol stressed that Alzheimer’s disease is one of the most important healthcare issues facing Europe. People suffering from Alzheimer’s disease also face critical co-morbidities, including sleep disorders. Crucially, the EU has regulatory and financial instruments to help address both Alzheimer’s disease and such co-morbidities. For instance, the Horizon 2020 and future Horizon Europe programme should be used to increase the research, which would help improve the assessment and treatment of insomnia and Alzheimer's disease. Also, MEP Tomislav Sokol encouraged putting insomnia in Alzheimer's disease higher up the EU's health policy initiatives, as this would further raise awareness of the difficulties which these people and their families face.

As explained by Professor Van Audenhove and Tineke Mollema, “the nights can feel very long,” both for the patients and the carers. “Sleep is the ‘washing machine’ of the brain,” it cleanses it from accumulated toxins. Lack of sleep can be comparable to living in the same clothes for years!”, said Professor Markku Partinen, Research Director at the Helsinki Sleep Clinic. Insomnia among patients also disrupts the sleep of family members providing care at home, which then impacts their health status. In addition, the depth of impact to the quality of patients and caregivers lives extends well beyond day to day care and the emotional/mental toll often pushes people to institutionalize there loved one.

Dr Jina Swartz and Prof Markku Partinen highlighted that Insomnia is not only a burdensome complication of Alzheimer’s disease – it is also a major risk factor for cognitive decline, which in turn can lead to Alzheimer’s disease.

Promoting the funding of patient- and carer-centred research to help improve the assessment and management of insomnia in people with Alzheimer’s disease;

Inclusion of insomnia in Alzheimer’s disease and dementia as a priority issue in upcoming EU health research initiatives;

Raising awareness on the environmental and life risk factors for Alzheimer’s disease, including sleep disturbances;

Developing initiatives to further support family members who care for people living with Alzheimer’s disease;

Developing pharmacological and non-pharmacological solutions to empower and support patients and carers.

A direct outcome of the event was the coordinated development of a Science Policy Paper, which builds on the discussion and conclusions of the roundtable and creates a bridge between the scientific evidence, real-life accounts from patients and carers, and the policy recommendations to help address this important issue.

This latest paper complements the White Paper “Driving Policy to Optimise Care", resulting from the previous “What If” Policy Roundtables. This White Paper covers the issues of stigma, discrimination and inequalities faced by people with Alzheimer’s disease, ethical challenges of early detection and diagnosis, and the economic implications of the disease in Europe.